Weeks 11 & 12

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Monday the 11th – Tuesday the 12th of September 2017

This week started off with a day really jam packed full of visitors. Unfortunately I woke up to a cold not much better than it had been all weekend. The sore throat luckily wasn’t as bad, however I still had a bad case of the sniffles! I was told today was the start of the preparation for cycle two of chemo on Wednesday. Of course there’s always a build up to these things, they’re never quite as simple as chemo at such a time on Wednesday! Up today was, as they put it, a “top up” of red blood cells. A blood transfusion. It started at around 10 and was finished by roughly 12:30. It was grand, it’s somehow just becoming another one of these things that starts to feel normal. This was just when the visitors started to arrive. It was a busy day from here of chatting with people from home, between friends and family there was a lovely mix and it was an enjoyable day of catching up with everyone. I got to go out for dinner again today after all the visitors left, knowing it would be the last chance to get out for about a week again as tomorrow was when I would be hooked up again permanently to fluids and what not for quite a while. Myself and Dad headed out and we decided to try somewhere different for a change, it was a nice quiet restaurant, which at first can seem risky as its usually a better sign when a place is busy. But it turned out to be one of the most enjoyable evenings I had in ages. A nice quiet atmosphere is sometimes better than ever, and the food was amazing to make things better! It was just the definition of a cute relaxed evening. There was no rush on us and we even had some tea and enjoyed a chat after. Knowing things were to get serious again from tomorrow meant I thoroughly appreciated everything to the max! Ate everything especially slow and enjoyed everything that small bit more than usual. When I got back to the hospital, I spent the rest of the evening/ night writing my blog. I was wrecked from the busy day, but I enjoyed releasing all my feelings on the blog, as a sort of therapeutic part of my week.

Tuesday morning started with a relaxation class. I really enjoy these and feel I’m improving at it each time I go. I always leave feeling so relaxed. The girl who does the class is young enough herself and I feel really comfortable there. Only one other person comes to it along with me so it’s a nice small class, which I prefer as I feel I can talk far easier in small groups, I’ve always been that way! The more people in a room, the less I’ll talk. After the class was over, my Dad’s sister and my Godmother, Mary and her husband Tommy came up from Leitrim to visit me. We had a lovely day with them and I was wrecked by evening when they left. My cold was annoying me too so I had to have an evening snooze, and knowing things were to start for chemo soon meant I wanted all the energy I could get. I was started on fluids to prepare for the chemo at 6pm this evening. Back to having a constant drip. I wasn’t going to be unhooked again until the weekend some time. The doctors told me today that I should be let home for a week or so before cycle three over the weekend all going well! This was brilliant news, absolute music to my ears. This gave me even more courage before my chemo tomorrow, just knowing I’d get to see home sooner than I’d planned! Delighted. I spent the night getting used to being hooked up again and trying not to worry about tomorrow as best as I could. I finished my blog and felt I was ready to start my next phase in my journey. Number two out of six was underway to start tomorrow morning as soon as my kidneys showed signs of being ready for it. There was a whole issue of kidneys being the most important thing about this chemo, it has an affect on the kidneys so it had to be made sure that my urine was at above a certain pH at all times. And if it wasn’t, they had to give me something through my Picc to get it to that pH. Also, once the chemo started, they would have to make sure that the chemo was flushed out of my system as soon as possible as it can actually damage my kidneys. There was a bigger picture at all times! A lot more to it than meets the eye, unfortunately.

Wednesday the 13th – Friday the 15th of September 2017

And so cycle two of chemo was upon me. It’s not as simple as it just starting though. The pH of my urine had to be at 7 or above before they could give me the chemo. It was 12:30 before this happened. This time it was a different drug than before, called Methotrexate, a common enough drug from what I hear, which is also commonly used for arthritis. As I mentioned before, this was intense and toxic in its own way, and especially on the kidneys. For this reason it was very important that once it was inside me, the next step was to flush every ounce of it out of me after. Fluids were the main thing used to do this. It was also important that my pH stayed at 7 or above until my system was clear of the Methotrexate. The actual chemo took 4 hours to go in, so that part was finished by 4:30.

Initially, the effects of it were just tiredness. But by 5 o’clock, the nausea set in. It was the worst sickness I had felt in quite a while and it just would not go away. They gave me an anti sickness through my IV, but it didn’t work. So they tried another. This one finally worked, slowly, but made me feel dizzy. Nothing is simple! I eventually, by 8 o’clock, felt a good bit better. This was the start of what was to be completely honest, the most mentally straining week, of the chemo journey so far. It was also physically challenging but the combination of the two led to it being quite tough. The unsettled nights of waking up with the most horrible pain you can imagine in your tummy of pure fullness and needing to go to the toilet. Then to make those matters harder, each time I went to the toilet, due to being on the constant fluids and them needing to know if the chemo was flushing out of my kidneys, my output had to be measured. This was a bigger burden than I’d imagined it would be. Each drink I drank had to be wrote down and told to the nurses. There was just so much to this cycle that frustrated me. I had to do this with the last cycle for a couple of days too, but this would take longer, and the fluids were non stop.

Thursday was looking promising as they told me I might even get out on Saturday all going well! Once I heard home, it was just heaven. It was starting to feel like I’d never see it again. The day was a relaxing mixed day of feeling generally well, but sickness in the morning and again in the evening. There was an anti sickness that started to work for me so we knew to use that one when the nurse was getting me one, that made things easier thank god. The sickness was far worse after this one.

By Friday my leg started to swell and so did everywhere really. The exact same as before except even worse. My face, my whole body. My left side worse than my right. Again, the doctors put it down to my drainage in my left side not being up to the drainage of everywhere else in my body as thats where the tumour is. And the fact they were pumping in constant fluids meant that it wasn’t having enough of a chance to get rid of it. So I piled on the weight and started to look like a more chubby child version of Niamh than anything else! It’s hard to deal with because you start to not feel like yourself anymore. But I got on with it for now. Today actually seemed promising as we got told my chemo levels were well on they’re way down. They had to go to 0.1 and they were at 0.5. As far as we were concerned, and the nurses and doctors, this looked promising, and it was a case of them dropping to 0.1 over the weekend and me getting home, the question was which day!

Saturday the 16th and Sunday the 17th of September 2017

Today was probably what I should honestly describe as one of my worst days since all of this started in Dublin. My levels of my chemo couldn’t be done until the 24/48 ect. mark after the chemo was done, which meant at 12:30 each day. So regardless of that, we had no idea of when home would come. However, I thought it was reassuring that my consultant happened to be the doctor on call this weekend in my ward. This though, happened to not make one bit of a difference. When she came to see me, she said that because of the swelling from the fluids, she would be happier waiting till Monday or Tuesday for me to go home. The levels of the chemo in me also needed to be lower before they could stop giving me the fluids, so it was a horrible knock on effect of one thing causing another. This felt like the longest day ever as a result of hearing I wasn’t getting home over the weekend at all. It really was a horrible day. Even Mam and Dad felt it. I was for the first time in a long time, feeling emotional about things, and just generally frustrated about the whole thing. I hated how I felt and looked. I was just sick of not feeling like myself anymore. Looking and feeling completely swelled up is unbearably tough. Things like walking were even proving challenging because of it. I told my parents I needed some alone time that evening, as I really just needed time to myself to process how I was feeling and how I could improve my bad mood. I of course ended up getting upset when a nurse came in and she noticed there was something up with me. She was so helpful and stayed and talked to me for ages about how I was feeling. She brought me out for a walk and we just chatted about everything I needed to get off my chest and she completlely made me see it was normal for me to be feeling the way Im feeling and that I just had to let it out. Sometimes we all have this tendency to think its bad to have a cry or let out the mixed emotions in our heads. When actually, all that’s needed to help is to do just that. Let it out. Be it to someone you know or, like I did, to someone I don’t know quite that well, but enough to just talk to her and get an outsider’s perspective. I needed that to happen that evening. Or I would have felt twice as bad tomorrow without it.

Sunday I wasn’t feeling the best physically. I had a morning of sickness and headaches. Not so nice. I did improve as the day went on thankfully as I had quite a few visitors up to see me. It was the day of the All Ireland final so I had a few in to see me before and after the game. My brother and sister came up and my cousin too, we all watched the match in the hospital as I wasn’t allowed out due to being on the fluids, but we made it what we could and it turned out to be quite an enjoyable day in the end. My levels came back from my bloods and of course sickeningly, they went down as far as 0.11…. when they need to go to 0.10 for the fluids to stop. So, so close. Yet not close enough. So the swelling continued.

Tuesday the 19th –  Friday the 22nd of September 2017

Tuesday was finally the day I got out of Dublin after a long month and a day stay. I felt every last day of that month as the time went on. I was never so happy to smell fresh air and get into the car and drive away from the Mater Hospital bound for Boyle! The thoughts of even seeing home again were something special. Just the smell of my house and the small things like that were what I looked forward to the most. They were the things I missed the most. Believe it or not though, even just seeing the town of Boyle was something I looked forward to. The town had done so much for me in the previous weeks and there was more to come, so I saw the place in a whole new light now. Each person I saw as we passed through the town when we got back, I looked at differently and appreciatively as more than likely, they had thought of me at some stage through all this or donated something towards my cause. Its unbelievable to think of how much people are helping me and my family to get through all of this. I really can’t thank people enough! I’ll be thanking people for the rest of my life at this rate. When I got home, to my house I mean, I was delighted to be greeted by my brother at the back door! I hadn’t seen David in so long so it was lovely to see him first thing. Then the lovely smell of home hit me and the fresh air smell of the country was also just perfect blowing in the back door. Everything about this moment was perfect.

I was then surprised by a lovely home made Welcome Home Niamh banner made by my little cousins. It was the cutest thing ever! We had invited the family over this evening earlier that day when I found out I was getting home. I thought it would be nice to see everyone all at once and have a big family gathering to celebrate being home. And so that’s what we did. It was so nice to see everyone again and I thoroughly enjoyed my night having everyone there and everyone happy. I was wrecked tired after it, but it was so very worth it! To have everyone together again and on a happy note, was amazing.

The next few days at home were spent relaxing mostly. I just enjoyed the home comforts which I had missed so much the past month. Being able to lye on the couch and watch Netflix series and what not, was just perfect. Doing normal things people my age do. As much as things aren’t normal anymore between all the tablets I have to take and injections and all that sort of thing, home is the most normal place to be in all of this. It is just heaven in comparison to hospital life.

Saturday the 22nd – Sunday the 23rd of September 2017

My days at home were coming to an end unfortunately. Knowing I was due to go back up to Dublin on Sunday meant that Saturday was my last full day at home. I was going to make the most of it! I went in to Boyle to a fundraising event that was being held for me in King House Tea Rooms, where I used to work. I really enjoyed it and seeing and talking to everyone who came to support me. It was nice to finally be able to attend a fundraiser and thank everyone personally myself. It felt so good to actually be able to do this. The article in The Irish Times which I featured in was out today so I had some breakfast in the Tea Rooms whilst reading the article about myself which felt nothing more than surreal to say the least. I never expected to be in a paper that big! Its a pity the circumstances under which I had to get in the Irish Times, but I suppose at least I can say its some sort of an achievement in itself. Myself and Oisin went for a walk in Lough Key Forest Part after the breakfast and it was just perfect also. Cold, but perfect. I had been imagining doing this when I was in Dublin, so to finally get my walk in the park, was brilliant! That evening, all my friends called to see me at home and it was great fun catching up with them all and having the chats about whats going on in their lives too now as I’ve missed out on all the gossip the last few months! It was great craic and I really enjoyed the night. It was so good because they could all actually make it. We were all together again for the first time in ages!

Sunday unfortunately creeped in and it was back to Dublin for us after a lovely home cooked dinner by Mam. We knew there was no bed for me in the hospital until the next morning, but to save travelling early in the morning as that would be a lot harder on me, we went up this evening and stayed in a hotel for the night. It would make things so much less stressful the next day too. So we went up to Dublin and stayed in the hotel for the night which was lovely and relaxing. Knowing things were to get serious again from tomorrow onwards meant that I made sure to enjoy every last bit of freedom while I still had it. The next chemo lined up, was the same as the first one I got. The first one which I don’t even rightly remember as I was so out of it. This made me quite nervous not knowing if it would effect me as badly this time or not as bad. The unknown was hard. As much as I did have it before! I just don’t remember it very well at all so it’s as if I never had it.

I’m writing this blog post far ahead of when all of this happened, as things have been hectic the last few weeks! So I apologise for the delay in any posts recently, but I have been quite sick and have had a few hiccups along the way. I hope to get weeks 13 and 14 done in the next week or so, and all will be clear then as to why I’m so behind with everything! But the reality of this horrible disease is that is so unpredictable. I think I’m going well with the blog and everything, but it has to take a back seat when I’m sick even though I would very much so love to be feeling up to doing it. I have to face it that I won’t be a lot of the time and it will have to wait and there will be a delay. I’m sure all of you lovely people reading this, completely understand this and wouldn’t even expect this explanation from me. But I just felt it was only fair to explain how hectic things have been for me these last few weeks rather than leaving ye wondering what has happened to my regular blog posts. I’ll do them when I’m up to it and unfortunately the treatment is hard and takes it out of me and leaves me wrecked and not with a whole pile of energy for doing this. Which is why I make a massive go at it any chance I am feeling good, and do my best to get as much of it done as possible. I really do love doing this and I have a big love for writing, especially since starting this journey. So I hope to keep this up and keep you all informed of my goings on after things happen. My journey isn’t a simple one, but remember, I can and will do this, with all I have in me, I’m convinced I am fighting this! And I’ve got all of you behind me, with me fighting this along the way.

 

 

 

 

 

 

 

 

 

 

Weeks 9 & 10

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Monday the 28th of August 2017

I knew starting off today that it would be yet again a busy day. There were lots of visitors scheduled for coming up to Dublin to see me today! Today was also the day I was to get my hair shaved off! This wasn’t until the end of the day though. I was feeling good thankfully, a little stronger than yesterday even. My appetite was starting to come back a little too which is good as it had been completely gone all week while on the chemo and after it. It felt so good to be gradually loosing the metallic taste of everything. Literally everything tasted metallic while on the chemo and it was horrible! It meant that everything that used to taste good to me, now no longer did! And things that I never would have eaten, like rice pudding, were now all I could eat. There was a pattern starting in the morning’s where between 11 and 12am Saturday, Sunday and again today, after eating whatever breakfast I got in, I would vomit. As they noticed this pattern, it was nipped in the bud and I was put on an anti sickness tablet regularly throughout the day. This was good as it also took away that horrible feeling of nausea which we all know too well as not being too nice! It felt so good to be able to eat again and to have an appetite. The smell of things which had gotten so sensitive, was also improving thankfully!

I had some family members visiting me in the morning. It was lovely to see them all however it was around the time I was feeling sick to start with so that part wasn’t ideal. I’m not entirely sure if I mentioned in last weeks blog about the fact that my leg had completely swollen up over the weekend. They were first concerned it could be from all the fluids I had been on, that the drainage mightn’t have worked and it went to my leg. They then started to become aware that it might be another blood clot. As soon as this possibility arose, I was organised for a CT scan today. I had to leave all the visitors to head off for yet another CT scan. Nothing new for me. I met lots of people down in the radiography department that had met me the week previous when I was having all of my repeat scans done and getting my Picc line in. They remembered me and said I was looking great considering the week I’ve had! It was lovely to meet them again and update them on everything. It put me at ease. They are all just so lovely here in the Mater I really can’t express that enough! The scan was quick enough and I returned back to my room to more visitors!

By half 8 Colleen had arrived to do my hair and the time had finally come. I really didn’t know how I was going to react to loosing my hair and to be completely honest I half expected myself to be a mess! To my surprise and everyone else who was there to witness it, I was smiling the whole way through it. I somehow got more strength from somewhere when I needed it most again! Because I was happy, everyone else was too and it wasn’t half as emotional as I thought it would be. I mean, it is a massive thing, getting your hair completely shaved off. But I think the fact I knew it was to come and I had been told the type of Chemotherapy that I was having would definitely make me lose my hair, meant I had mentally accepted that this was how things had to be. I was mentally prepared, and as I’ve mentioned before, for me that’s half the battle to being strong! When I looked in the mirror for the first time, I surprised myself in actually liking it on myself. I thought I would have a horrible shaped head, but it actually isn’t so bad after all thank god! It’s weird how quickly I got used to seeing myself without hair. It became the new me. The look just goes along with the new me that was coming with this disease. A stronger version of me. Everyone loved the hair(or lack of it), the family and even Oisín thought it really suited me! There were plenty of photos taken and then by the end of the night, there was a very tired Niamh. That was one busy day!

Tuesday the 29th of August 2017

I was luckily feeling good today. Waking up without hair felt slightly weird and it took me a moment to figure out what was happening and to get used to looking at myself again throughout the morning. But I adjusted to it once again. I knew once again that there were a few things on so I was up early and ready for it. The doctors were in as always nice and early. They were happy with me so far and said the next few days were when my vulnerable period will start. My blood counts would all soon start to drop. This in return leaves me more vulnerable to infections as I wont be able fight them off as easy as if I had my usual high blood counts. Knowing it was to come meant I could just be extra careful and come in to as little possible contact with people during the week. The doctors still made it clear to not hide away and to get out and live when I’m feeling good. So I listened to this advice too all the same. My swelling in my leg was thankfully starting to go down an awful lot which is a great sign. I got the news later on in the day that the results of the CT scan showed that there is no blood clot in my leg. However the one on my lung has gotten bigger, which is annoying! So they made the decision to put me on two injections now instead of one. I am giving them to myself now anyway so it just meant one in the morning and one at night instead of just one in the evening. I didn’t mind so much when they said this should work more effectively. The fact I now give them to myself also makes it easier as I feel more in control. There’s a lot to be said for self control, that’s one thing this is massively teaching me!

A company in Dublin called Roches, which provides wigs for people with hair loss from cancer and alopecia, called in to see me this morning. A lovely lady that works for them called Siobhan, was in charge of helping me out with picking my wig! She was so so helpful. I tried on lots of different wigs, all fairly similar to the cut and colour that I always had. I ended up going back to the very first one that I tried on as it was most like how I used to look. It was my favourite so I just went back to that one and said I wanted it, it was perfect. I wasn’t going to be wearing it often but it was still great to know I have one now for when I felt I wanted to go back to looking how I always looked. I at least now have the option or choice. To my surprise, later that day, Siobhan called my Mam. She said she found me very inspirational today and for my age she thought I was very strong. She was wondering then if I would be interested in talking to The Irish Times for a feature article that they were doing on Roches. It was on the following Monday. I said I would think about it as it seemed quite daunting and massive at first! They would be talking to a few others that have cancer and alopecia, but I would be the youngest. I was also told I can completely say what I want and I don’t have to talk about everything they ask if I don’t want. I was going to think about it regardless and see how I felt after a while about it, it all just seemed so daunting for me right now!

Wednesday the 30th of August – Friday the 1st of September 2017

Today, Wednesday, was the first day I was at risk of infection starting as a result of my blood counts dropping. They would gradually start to drop from today onwards. This is normal of course after chemo. Because of this I sort of had everyone warned that these coming days would not be ideal for visiting me. But none the less, people wanted to see me before I was at my most vulnerable and so today was planned for a few family members to come up and see me. I was feeling good and wouldn’t have even known my blood counts were low only the doctors told me! Which is normal for the start of it apparently. I ended up leaving the ward for the first time for a reason other than going for scans, I got out as far as the café in the hospital! This was even massive for me since all I had seen of the place was the radiography department and my ward. It was lovely to have extended family members there with me too to enjoy it with. After I got back and the visitors all left it was a busy afternoon and evening too with physio and social workers and what not. I was wrecked after my day and happy to get to sleep early that night!

Thursday and Friday were fairly uneventful days so I’ll only touch on them! The main emphasis on them is that my blood counts were dropping fairly fast and fairly low. They were concerned about my platelets and white blood cells in particular. There was a possibility over the weekend I would need a blood transfusion of platelets but it wasn’t guaranteed at the same time. The main risk in all of it was just me picking up an infection, but at the same time, they said I am allowed hours out of the hospital and my doctors are all for living and enjoying quality of life while I can! This I was delighted to hear because I was getting so sick of being constantly stuck in the hospital grounds. It’s been 3 weeks today since I was admitted to Sligo Hospital with the worsening pain. And I have many weeks ahead of the hospital life so I may as well get out for hours while I’m feeling good!

Saturday the 2nd & Sunday the 3rd of September 2017

Today was again, a good day! I was feeling great once again and the pain being pretty much completely gone now aside from the odd reminder which came very rarely, meant I felt better than I have felt for months! Today I had a lovely stress free relaxing day with Mam, we played cards and board games and I even spent some time doing adult colouring. (I’m a big child at heart, please don’t judge!) I was feeling so great we decided to go out for some dinner in the evening. Some normal, nice food that wasn’t hospital food was extremely appealing to me! My appetite has by now come back and it was tasting better than ever now after the week of everything tasting metallic. We went to a local pub that does really good food, Mam and Dad by now know the places that are nice as they are always up here with me and they have to eat! So I took Mam’s advice and we went to the place she recommended as good. I didn’t feel like wearing my wig so I wore a hat instead. I felt it for the first time walking in the doors of the pub. All eyes on me. Or at least that’s definitely how it felt anyway. I guess it probably seemed worse than it was. But I think I had sort of forgotten that I’m different now and almost wasn’t prepared for everyone to stare, because I’d gotten so used to it just being people in the hospital who see me, and they’ve all adjusted to seeing me this way. I got used to the people looking and I didn’t care anymore. I was there to enjoy my food, and I sure did! When I also got used to the feeling of not being the same as before, I felt at ease and happy. Happy to now be feeling so good as to be able to actually eat out somewhere nice and enjoy good food. It’s the small things! They are now massive to me. When I got back to the hospital, I was very tired and my pain in my leg was annoying me. But I suppose that was to be expected since it was my first day out, even if I wasn’t even gone two hours.

On Sunday, I felt wrecked even waking up. I was told as the day went on my blood results showed my platelets were at the worrying stage now and so they were saying that the blood transfusion might be on the cards for today or tomorrow. It made sense for me to be feeling as tired as I was because of my bloods. I just wanted to sleep. I had a few visitors today and it was lovely to have them regardless of feeling tired. My sister Emma came up and I hadn’t seen her all week so it was lovely to see her and to catch up! I improved as the evening went on and I enjoyed watching the hurling final with my Dad. It was an enjoyable day in the end and there was still no blood transfusion so the tiredness continued but that’s nothing worth complaining about! I had agreed over the weekend to doing the interview tomorrow with the Irish Times, so as the evening went on, I was feeling nervous about the morning and what it would bring! But I tried to not think about it too much as I knew I would only say what I wanted. And this whole situation has changed me as a person, so this is something I can probably do no problem now, where as its something I would have struggled with 3 months ago!

Monday the 4th of September 2017

Today was the day of the interview with the Irish Times! They had told me it would be around 10:30am. I was nervous enough when I woke up, but between doctors and nurses coming in, the morning flew by and I hadn’t much of a chance to think about it. The time started to pass and it creeped past half 10. Myself and Dad, who was up with me until Thursday this week, played some board games while we waited. Something that turned out to be quite fun! By two o’clock, in arrived The Irish Times editor, Jennifer O’Connell, the owner of Roches, Anne Roche, and a photographer called Dara. The interview went really well and the editor was so lovely in every way, extremely sensitive to my feelings, and didn’t ask or expect too much of me. I completely led what I wanted to say and any questions asked, were answerable. I couldn’t get over how well it went and how ok I was at talking. I thought I’d completely freeze at certain questions or that I’d rant on about certain things that were of no interest, but I think I just gave the right amount of information and I didn’t over do it. It was an experience to say the least. Not something I thought I would ever have to do. But something I actually enjoyed. It was nice to tell my story and feel good about myself for telling it in such a positive way. If I can raise more awareness by further sharing my story aside from here on my blog, I will! The article will be in the feature article section on the 23rd of September as far as I know, for anyone who wants to read it!

As surreal as the interview was and hard to believe it had happened, once it was over, the day just went back to reality. Back to talking and wondering about my bloods and what not. They were thinking I might need to have a blood transfusion before the day was over, but then they decided to take my bloods again to see if they were still as low. After a few hours of having heard nothing, I went and asked them if I was having my blood transfusion or not, and it turned out that my bloods had now surprisingly started to go back up themselves! I was delighted. This was a good sign as I was now bouncing back quicker than they even expected! They had predicted Wednesday would be the day my blood counts would start to recover themselves. I bet the prediction by two days, for me that was a great sign! I was feeling great along with it, no sickness even, and my appetite was starting to improve massively. I just knew myself by now that I am definitely strong enough to fight this horrible disease. I’ve got it in me. I knew I had but now I’m starting to believe it even more each day. My pain has now gone from being at a constant 5-10 to only a 2 every so often! Such a difference.

Tuesday the 5th – Thursday the 7th of September 2017

Tuesday was another day of plans. I started the day off with a relaxation class that was on in my ward. I really enjoyed it. It did exactly as it says in the name, relaxed me. It was all about visualisation, and I really found it worked for me! After this, I had a make up workshop run by Look Good Feel Good. I really enjoyed this too, of course as a 19 year old, make up is an interest of mine! Learning what is ok to use and what isn’t now that I’m on chemo is important. I got to be the model, so the skin care and make up was all tried out on me by a lovely make up artist. There were 12 of us altogether, but I was the only in patient, the rest were all out patients who had come into the hospital especially for it. It was really nice to meet others going through cancer and to get to chat to them about similar problems and experiences. Just as I thought it was coming to an end, who walked in only the lady from yesterday, Anne Roche. I wasn’t expecting to see her again so soon! She was here to answer any questions about natural appearance and wigs. It was so nice to get chatting to her again! She thanked me for yesterday and told me I did really well and that I’d really impressed the editor and photographer from The Irish Times. I couldn’t believe that they felt that way.

Wednesday morning brought with it busyness too, no different to the previous day. I had a visitor from Boyle, Sean O’Dowd from RealBoyle, the local website. With the town getting together to so generously organise and host fundraising events to help myself and my family through this tough time, I had decided I would like to make a video for the launch night of the fundraising which was coming up on Friday the 8th. The idea behind the video was to thank everyone as best as I could, since I’ve been away from home for so long now that I haven’t been able to thank anyone properly! I also would have loved to be able to attend the launch night to thank and meet everyone personally. This wasn’t obviously possible, as I mentioned in the video. So the next best thing was to have this video for the night itself! Sean O’Dowd offered kindly to do the video, and he came up this Wednesday morning around 10am to take it. I was a small bit nervous but once I got into it I was grand. I knew what I wanted to say, I just wouldn’t be the best at public speaking, so there were a good few buts and em’s and eh’s, but I managed to pull a few sentences together anyway and it did the job and I got my point across, at least I think I did anyway! I had plenty of visitors all day after this, it was a busy day! I was also told I am allowed hours out as my blood counts are all coming back up! I took full advantage of this and I went out for lunch with my sister Emma. We visited a café just up the road called The White Moose Café. The two men that run it are Snapchat famous and I was hoping they would be there and that I’d get to meet them as I really enjoy they’re Snapchat. Since I’ve been sick I’ve deleted most vloggers on Snapchat, because of just not having the patience or time to watch them all, but I kept them as I just find they’re way of living and approaching life admirable! Unfortunately, this was they’re day off and we didn’t get to meet them. The food was still so good and I was happy to see the place! Another time, after all I’m going to be here a lot now that my chemo is in Dublin.

On Thursday myself and Mam went to the city centre to go to the cinema. I really enjoyed it. Something that I used to do so often was go to the cinema, and now its something I couldn’t even remember when I’d done last. I really appreciated every last moment of it more than ever before. From the taste of the popcorn which I now luckily have the appetite for, to the whole momentum and feeling you get when the lights go down and the movie starts and you get a sort of excitement for the unknown. I just noticed so much more than ever before! After the movie, when we were as far in as we were, we said we would have a little look around some shops. Hopping along on the crutches made everything about this awkward however. After the second shop, I had enough of trying to get through people. This was annoying as I otherwise enjoyed the whole feeling of it being normal to be 19 and go shopping. The enjoyment of seeing a top that I liked and thinking maybe I’ll get it. These were the types of things I should be doing when I feel like it. Not sitting in a hospital room twenty four seven thinking about what’s to come next medically for me. Not being in any way bitter about things though, in case that’s how it sounds! It was just so nice to feel a sense of normality again.

Friday the 8th – Sunday the 10th of September 2017

Friday turned out to be quite a significant day, for the reason I was told I can now walk without my crutches if I feel I’m able to. I was never so happy when I was told this! I finally have more independence back. Crutches have meant I can’t use my hands for anything at any time when I want to get from A to B. They have been a nuisance. I had a bad night of sleep last night and that meant I wasn’t in the best of form waking up, but to get the news that I’m allowed to walk around crutch free, put me in as good of form as I could be! I had physio in the morning which went really well. I went for my first walk around without the crutches with her and she was so happy with the strength in my bad leg! She said she would do up a programme of exercises for me to now start doing to strengthen up both my legs, my pelvis and my core. It would be really important for these areas to all be strong for after surgery. I was actually happy to hear this as with all the free time I’ve got now, I’d like to be doing something useful for the future, especially if it helps with my recovery. The doctors are all very happy with me too as I bounced back even quicker than they’d expected from my first cycle of chemo. With cycle two starting next Wednesday, the 13th, they told me to enjoy my weekend and get out as much as I wanted. On this Friday evening I listened to them and I put on nice clothes, my wig, and even wore make up! Myself and Mam headed out for dinner. We went to a lovely restaurant and it felt so nice to feel not sick, it just felt like old times. I felt like the old me, I even looked as close as I could to the old me! I was starting to get a small bit of a sniffle in my nose, but decided not to worry, as that’s normal for someone who’s immune system has been down. When I got back to the hospital I was wrecked, but it was worth it as I’d really enjoyed my evening with Mam. The small things, as I keep mentioning, are so much more impressionable on me now! Knowing the fundraising launch was on for me tonight back home had me completely on edge for the night. I couldn’t stop wondering what it was like and just feeling curious about it in general. It just felt like a dream that all this was happening back home for me… I just didn’t know what to do with myself for the night! I couldn’t get to sleep thinking about it all, I kept waking up thinking it was morning and hoping to ask someone about how the night went. I had a few messages from people at different stages of the night to tell me that the place was packed and the night was a huge success. I couldn’t believe it. I got a few videos on Snapchat showing how full the place was, and it was so surreal to think that all of those people were there for me. Unbelievable. That is the word that kept coming into my head. I got emotional at the thought of it all.

Saturday morning I woke up with a massive headache after the bad night of sleep. I didn’t mind as the reasons were unavoidable. I also woke up to numerous messages. My Mam came down to me around 9 and she got so many calls all morning from the family who filled us all in on the night. Chris O’Dowd had actually arrived at the fundraising launch for me! This I could not get over!! It was one of the biggest crowds The Saddlers has apparently had. How remarkable this was. The whole community got behind me. I really cannot thank you all enough. Anyone who took part in organising the event and who went along to support me, you are all amazing. I really will be forever thanking people! The town of Boyle and local areas are something else, the numerous other fundraising events that have been held for me over the weekend, between a static cycle from Boyle to Birmingham and back to Boyle by the Curlieu Wheelers, a coffee morning in Brogan’s Totalhealth pharmacy, and a family funday by Boyle Celtic. Wow. The GoFundMe page which was set up has also been doing unbelievably well, thanks to all the kind donations made by everyone from far and wide. Thank you to anyone who has even in the smallest way contributed to getting us through this tough time, by donations and your extremely heart felt good wishes. I really don’t know how I’m going to thank everyone enough. I only hope that on my good days and when I get to go home for a few days in between chemo’s, that I can make it to some of the many more events which are being planned in my name, to thank everyone personally. I will do my very best to make it to some of them and meet the people who have been so good to me. I know so many are now following my journey and are reading my blog weekly, and so you probably feel like you know me in a close way even if you didn’t ever know me before. I would love to meet and get talking to people who feel my blog has had a positive effect on they’re life. As that’s what I hope this can do for people. If it can help you to appreciate your life for what it is and not what it isn’t, then I feel I’ve achieved my main goal here.

The day consisted of my lovely grand aunt Liz calling to see me and my Mam. We went for a really nice lunch and she filled me in on her knowledge of natural and organic products as an alternative to using products with chemicals. She really is brilliant help through all of this. If your reading this Liz, thank you. You’ve been such good help and guidance through this from day one. It helps so much to have people who know about the right from the wrongs when it comes to chemo. It’s all still so new for us so any bit of guidance is always good! I was so tired after lunch after having two bad nights sleep, that I went for a nap in the middle of the day. It was needed and I felt a lot better after it. When the night nurse came on duty and I explained about how tired I’ve been, I asked her if I could have my tablets and do my injection earlier tonight than usual as I needed an early night. She was so lovely about it and said no problem and even offered to put all the usual callers off coming in to me in the morning so that I could sleep in until 9am rather than the usual of being woken up at 6:30am and every half hour by someone else for some other reason between breakfast and water and what not. I happily took her up on this offer!

I woke up Sunday morning feeling refreshed. I had the best nights sleep. I got 10 hours when I counted it, but boy did I need that! I had a busy day of visitors lined up so I was happy to not be feeling tired anymore. It was from one visitor to another all day. When it got to midday, Oisín, Dad, Emma and David were all there. Mam had been with me the last few days, so now I had the whole family together for the first time in two weeks. With us all being together, we went for a nice dinner and it was so good. All together again, and for the first time in ages we were able to do something nice as a family outside of a hospital. I really appreciated every small thing about this day. I may have complained about some things and went on as my usual self, but I stopped so many times to look around and think how perfect everything about today was. I had my perfect family and boyfriend with me and we were able to enjoy each others company, with me being pain free for the first time in a ages. The only thing to put a downer on the day a small bit was the fact my head cold got worse when I got back to the hospital, and my throat started to feel sore. But I didn’t let this get the better of me! I still enjoyed the company of everyone until it reached the time for them to go home. I was sad to see them all leaving, but at the same time I was wrecked and I needed a nap, so I was happy to get some sleep after they all left. The next significant thing to happen tonight was my hair started to fall out. The stubble on my head that was actually growing over the last two weeks since I had it shaved, was now shedding away each time I pulled at it. This was a milestone. An inevitable one. Dad stayed with me and we had a nice relaxing evening and things went back to being quiet. The whole routine here just starts to feel so normal. I’m three weeks here now and it feels every week of it, but at the same time the last two weeks of it have flown, it was the first week that dragged! I’ve gotten to know everyone here on first name terms and I’ve built relationships with them all. Even with other patients. I’m the youngest on the St. Vincents ward, but we all have cancer here. So we can all relate in conversation to how it feels to be going through the treatment and just how it feels to have cancer in general. It helps to talk to people going through it. Everyone here has to stay for long periods of time, we are all in the same boat. This makes things so much easier. So I have to say I’m as happy as I can be here, as the care is excellent along with the people here. It has already become normal to be here and I’m making the best of every day, taking it in my stride! It’s the only thing to do. As I’m starting to see so much more each day, the mind comes along side the body in a massive way. That’s why it is so important to have a positive mental attitude towards anything strenuous in life. What good does being negative have on an already unfortunate situation!

 

 

 

 

 

 

Weeks 7 & 8

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Monday the 14th- Thursday the 17th of August 2017

It was starting to creep closer to the result day. Not long now. But this was both a good thing and a bad thing as it was the end of the wait in one way and the start of the official recovery in another. The nerves were there but the longing to finally know was there all the more. 
Tuesday morning creeped in and I was actually feeling quite good pain wise which made things a little easier! I had a couple of things on today to distract me from the results anyway which is also good. I had to have my dressing changed for the first time by my doctor since my biopsy surgery. I was nervous about this too incase it wasn’t healing properly or any complication like that that may happen such as infection, we all know the usual bummers! All went well in the doctors and the wound had healed well thank god! The only thing was that my doctor wasn’t fully happy with how my lung had cleared up so she put me on another course of antibiotics, and said to call back in on Friday if it still doesn’t feel right as I need to get it right. So off I went to SuperValu with Mam to do the shopping, since for the first time in ages, I was actually feeling up to it! I decided I’d do something normal, and sure what about it if people stare and think ‘oh god, she’s the sick girl’, let them at it! It was something I have to get used to regardless now anyway. Typically, just as we’d made our way to the checkout, Mam’s phone rang. Surely it was an English number. Mam answered and they asked to speak to me. I was handed the phone by Mam to be greeted by a lovely nurse from Birmingham on the team that is dealing with my case on they’re side. 
She told me she had my results and of course with me being in SuperValu I came out with it that I’m actually just in the shop! She had a little nervous laugh at the fact she was imagining me in a shop after being told I have my official biopsy results, I don’t blame her! I made my way to the car and told her to hold on just a minute. This was the moment I was officially told that I have a very active Osteosarcoma of my left pelvic bone. Not the moment I had in mind as you can imagine, but I was dying to know so I didn’t want to wait! She said that the plan put in place now would probably be 3 cycles of chemo in Ireland first. Where and when it started would have to be looked into. Then that would bring me to 10 weeks, roughly before Christmas. Surgery over there would be the next plan. And then back here for 3 more cycles of chemo after recovering from surgery! Finally. I had a plan. 
When I heard Osteosarcoma, I thought this is good. As they aren’t as rare as Ewing’s Sarcoma. But the more I looked into it, bone cancer is bone cancer. And as a primary cancer, bone is rare in general. I decided to be nothing but positive though as I finally had a plan in place and I was just glad I wasn’t headed back for more surgery straight away as I still hadn’t really recovered from the last!

Friday the 18th- Monday the 21st of August 2017

After having getting my results and finally knowing what was in store for the next few months atleast, I decided to go a small bit mad with my hair on the previous day, Thursday, with Oisín’s sister Colleen being a hairdresser(an amazing one might I add), it made it easy for us to scheme and plan an impulse cut and dye! I went blonde and cut it up shorter, and I loved it! The next plan was to go a light pink colour just to go even wilder. This was planned for Friday evening. Unfortunately though, Friday had its own plan and it did not involve Niamh’s hair in any way!
I wasn’t feeling the best to start with in the morning and was concerned slightly about the fact my lung pain still wasn’t rightly clearing. I made an appointment with my GP incase for that evening and that was the plan. The public health nurse also came to see me again which was lovely! The time flew and next thing I knew it was time to go to the appointment. Off I went, oblivious as to what was to come. The journey in did me absolutely no good, my pain got bad and I started to feel generally weak and unwell. Of course my doctor saw me at my worst and when she got listening to my lung and checked everything out, she was not happy to let me home as I was. Next destination, Sligo University Hospital. She wanted it to be cleared up and checked thoroughly over there, maybe being put on IV antibiotics. She was now calling it pneumonia on my right lung which has not cleared. I went off to Sligo thinking, I might not even have to stay! As I wasn’t as bad as I had been previous times going in with pain, although I still wasn’t great.
I went from the Acute Assessment Ward, where all was checked. Then to have an X-ray of my lungs. The results came back and it turned out there was a blood clot in my lung. This was just mighty, what’s another complication! As if I hadn’t enough already.
They started me on IV antibiotics and an injection every day to thin my blood for the blood clot. The pneumonia/ pleurisy showed up in the X-ray to have been still there also hence the antibiotics!
I was moved to the Short Stay Ward in the hospital where I was to stay for as long as it took for me to clear this up. I was at my usual pain wise, as it never really ever went away. But I was comfortable enough heading off to sleep that night. Mam and Dad headed off and I tried to go to sleep. Then I stupidly started to try to write my blog and from there I got a different type, a new type, of pain in my front left side going down into my groin and the inside of my leg. This was not like any pain before. I brushed it off at first and thought nothing of it really. As the night went on though, it gradually worsened. To a pain I have never experienced in my life. The thing that panicked me most was my hands, feet and legs started to get pins and needles and then I couldn’t feel certain fingers on my hands at all. Completely numb. I rang the bell for the nurse and described how bad the pain was. She was the loveliest nurse and did absolutely everything she could for me! I was in such a panic with the pain I had worked myself up and I was crying with it. I was put on IV paracetamol and the doctor on call was called. The IV paracetamol thankfully eased the edge off the pain! But not for long enough. By 5:30am I was awake with the pain again.
This excruciating, non word describing type of pain which I experienced… lasted all weekend. Nothing at all would work except somehow, IV paracetamol. Unfortunately that could only be taken every four hours though, and the pain would be back after 2. My Mam and Dad will describe me to as having looked like a woman in constant childbirth for 3 days! The doctors and nurses were trying and changing everything, but nothing was working to take the pain away. It was a weekend from hell! I won’t even go in to any more detail on it as it’s very hard to go back there and think about it.

Monday the 21st- Tuesday the 22nd of August 2017

By Monday we all had enough. I could see the heartache that my pain was causing my family and I could see they were fed up. They got on to everyone and everything they could to get me pushed up to Dublin. We had been given the date of Monday the 28th for me to go to the Mater Hospital and start my treatment and preparation for treatment over the weekend already. This seemed a long distance away, even though it was really a week. Every week is precious! The push began. A push that shouldn’t have had to even happen only that the health system is a joke in this country in my opinion! For a 19 year old girl to be able to see that, says a lot.
Thankfully, someone worked they’re magic somewhere! We got a call by 11am to say they have a bed ready for me in the Mater Hospital Dublin today. The only thing was, if we didn’t get there today, the bed would be gone. So we pushed our way again and an ambulance was organised to leave by around 2:30pm to bring me to Dublin because I couldn’t travel any other way with the pain.
Finally, we felt we were getting somewhere! It was a painful journey up, but we got there, for around 8pm.
My new official consultant/ professor, Michaela Higgins, was on her holidays this week, which meant her second in command was going to be meeting me and taking charge of my case. Along with the help of a retired professor Kearney, who specialises in Osteosarcomas and has many years of experience in dealing with them. With having worked in the US for years, he has seen a lot. The fact he was coming out of a retirement for a week to be on top of my case, was mesmerising. I knew this was serious.
When we arrived, we met the lovely doctor Eileen McMahon who is actually from the West herself. This one being the doctor next in command who I would be seeing most of until my consultant came back from her holidays. She gave it to me straight from the minute we met her. Any questions I asked, she answered. Even the questions that they had been not giving me straight answers to in Sligo or Birmingham. She put it to me straight that I would loose my leg and left pelvis. An amputation would be a definite. This was something no one would ever tell me before now. Naturally, when I heard this, it affected me. The thought of loosing a leg and pelvis knowing I would have to learn to walk again down the line, scared the hell out of me! And with being a girl, what pops into your head is the image of not being able to wear dresses as much and that sort of thing. This became my big news of the night and it seemed awful at the time but now when I think back, it’s something so small if it means I get to live!
I was told there would be a busy day ahead for me tomorrow for a complete update on every scan to see exactly where I was at since the last scans that were done.

Tuesday morning started off calm. The doctor came and said that actually it might not be as busy of a day as they’d planned for me as they’re trying to book all the scans, but of course with me being very short notice it was hard. I was definitely scheduled for a bone scan at 11. They said they thought that would be it until tomorrow. I went for my bone scan and all went well. The next thing I knew there were porters bringing me from scanner room to scanner room for MRI’s, CT’s and X-rays.
So much for a calm day. Things got serious from today on. I was back from all my scans by evening, when the team of doctors came to see me. It wasn’t great news. Chemotherapy was now scheduled for first thing in the morning after I get my Picc line in. It was now going to be all my 6 cycles of chemo at once rather than the original plan of 3 cycles, surgery, and then 3 more cycles. I’m not going to go into too much detail here as it’s hard for me to write about, but we were told things had gotten worse from the last scans in a few different ways.
This was so much to take in. How lucky I was to finally get here when I got here or this could have gotten even worse in the week. The only way to describe this was an absolute whirlwind. There was no time to take anything in or process anything! Things went from bad to a whole lot worse and I just had to fire on and get on with things. I’m so angry when I think of all the weeks of waiting and wondering and being in constant pain, at the fact that the health system here is such a disgrace. Having to wait on paperwork to go through and be signed and having to go to Birmingham to have a biopsy and await results for not one, but two biopsies, was just horrible. If only things could have moved quicker and I was seen as more of the urgency that I was.

Wednesday the 23rd- Saturday the 26th of August 2017

Wednesday morning was a blur to think back on now. It really is all a jumble of busyness in my head now. I first had to have my Picc line inserted in my arm for the chemo to go in. A line going straight into my vena cava. I was so nervous about this procedure I barely remember what it was like except that I didn’t shut up talking to the team of people doing it! I got to watch it being brought in my arm and up my shoulder on an ultrasound image in front which was used to guide them. The area being put under local anaesthetic was the sorest of all, after that it was just a discomfort. It was one more box ticked and boy was I relieved to be out of that room! I went from there to audiology for a hearing test. Chemo can effect people’s hearing, so they had to have a before and after to compare on. I have perfect hearing which was finally one thing I have going for me in all of this! That was it then until chemo. I started my chemo that afternoon and the next 3/4 days are honestly a blur. I don’t remember much at all from them so there would be no point in me trying to write about them here and pretend I do! I was bed bound completely on the Thursday and I was having hallucinations to make matters worse. Those I remember! I don’t know what I said to doctors/ nurses/ family or anyone though. Apparently because my pain relief was such a strong dosage, along with the chemo drugs in my system, this is why I was so not with it! So hopefully the next cycles won’t be as bad as this one was. The reason being my pain has eased so much finally! And as a result I’m on a lot less medication which won’t cause as much of an affect next time please god. I had been told I’ll be here in Dublin for a while as they need to keep me for observations. So I’ll be here right up until the 2nd cycle!

Sunday the 27th of August 2017

Today was the type of a day that made the previous 4 worth it! I had a lovely busy day of visitors between my family, boyfriend and his family, and friends. It was just so good to be feeling good for the first day in a few very bad days. And to be able to enjoy everyone’s company! I was starting to feel like I was more myself as I wasn’t with it for so long there. I was getting my independence back also and there’s a lot to be said for that I now realise! The bad days really do make me appreciate the good days now. Even small things that I notice going on in the ward or over hearing a conversation, I see differently. Watching a programme on the TV, I think about how I used to not notice certain things that now stand out to me. The world we live has actually got a lot to be said for it. We should all appreciate and notice the smaller, finer details. Rather than the big and what seem like more important things. I’m sure anyone going through something similar, or who has been through something life changing like this…. will know exactly where I am coming from. Take each day as it comes, because we have no idea what is ahead of us. Trust that what’s happening now is happening for a reason and let that reason show itself in good time! But appreciate the small things. That’s the one thing I want to stress to people in this blog post, if anyone takes anything from this, please take that!

Week 6

Monday the 7th of August 2017

Today I woke up feeling just as bad as I had been for the last two days. Absolutely no better. However, what completely shocked me was the contrast in how much more attention was paid to me in hospital in Birmingham today, it being Monday, compared to over the weekend. There were good nurses on and everything was being done so much quicker. It was like a different place. As I was feeling no better from the weekend, a doctor came to see me who had saw me already on Friday. I told him exactly how I’d been feeling and he checked my chest and then he came out with something we were not prepared for in the slightest. He said that he could not allow me to fly tomorrow because of my chest. He was afraid that if it was something worse than costochondritis, being up in the air and in low pressure, my lung could collapse. This was the last thing I wanted to hear today on top of everything else!

Getting home was all I wanted along with feeling better, I was so sick of it here. He said that I will be sent for an X-ray to check that all is ok. I found this convenient as at the weekend, the doctor had said an X-ray would be no use as it would show nothing! It’s a different place at the weekend than during the week it is crazy…. I was not happy in the slightest and things were starting to affect me in ways I didn’t want them to. For the first time in all of this since the day, and day after I got the initial news that I had a tumour, I broke down. I just felt like things were extremely unfair. I wanted to get home to all my family and my boyfriend and back to normality. And I wanted to somehow get this sorted and feel better. I was sick of feeling this unwell with not being able to breath or talk. Crying did not help my breathing one bit and brought on something similar to what I imagine a panic attack is like. The combination of wanting and needing to cry but my chest not allowing me to catch a breath was horrible.

Within 5 minutes and in the middle of this minor breakdown, two really chirpy nurses knocked on the door and came in to inform me that there was a request for my bloods to be taken. As I was in tears and feeling fed up, this was the last thing I wanted next! Of course with me having near to non existent veins, they had a job to get my blood! Eventually after a struggle, they got them thank god. They were only about 2 minutes out the door, when a porter came to bring me for my X-ray. I couldn’t get over how quick everything was happening today in comparison to the two previous days!

I went down for my X-ray and even on my way down here I was feeling miserable and was holding back tears. Which felt awful too because it was small things setting me off each time and I just wanted to stop but couldn’t. The X-ray was very fast I was in and out in around 5 minutes! I was brought back up to my room, and about 5 minutes after that again, another doctor came to see me along with the previous one. This time he was a consultant and he specialises in lungs and that area. He listened to everything I had to say carefully. He checked my chest with his stethoscope and then he knocked on 6 different areas of my back, all of which sounded hollow, which is how they should sound apparently, except for one. My bottom right area. I jumped with the pain of it. And it didn’t sound how it should sound. He said it was exactly as he expected and then went on to tell me that the X-ray showed up shadowing on my bottom right lung. He said it appears to be a case of Pleurisy. This is inflammation of the lining of the lungs. More serious than Costochondritis. It’s apparently a step down from Pneumonia. I asked how could I have gotten this. He explained how I probably had what would normally be a small cold that I would usually be able to fight off, coming on before surgery. And then with my system being run down before and after surgery, it left me more susceptible to getting something. So instead of what would normally be a cold, I got Pleurisy?! What came next from this doctor, absolutely made my day! He said there’s no reason why I couldn’t fly tomorrow if I’m feeling up to it. There was no risk of my lung collapsing with Pleurisy. I was delighted! He put me on a course of antibiotics for the week ahead. We all thanked him so much as he had actually made our day by telling us we could fly! Otherwise we would have had to get the ferry which would have been so much longer and more complicated.

As the day went on there was a constant gradual improvement in how I was feeling. By night I was well improved and we decided we would pack and be ready to go for the morning anyway! All going well I would continue to get better and not worse.

Tuesday the 8th of August 2017

I woke up feeling not near to 100% but I still wasn’t near as bad as I was over the weekend and early yesterday. The plan was in place to go home today and nothing was going stopping me! We had been here almost a week now and it was just at that stage where I missed everyone back home so much and I could not wait to see them! Our flight was at 10am so we had told the night nurses last night that all of the discharging would have to be done early thismorning. We got up at 6 and at half 6 the nurse came to start this process which took longer than I thought it would. She had to send me home with enough medication and had to go through exactly what was there. She then had to explain to my Mam about the injections that I’ve been on for thinning the blood and preventing blood clots after surgery. My mam would have to give me the remaining 9 of them each night at home, which was going to be fun…. When all of the discharging was done, we then had to wait for an ambulance which the hospital had organised to come around 7am to bring us to the airport. We waited. And waited. It was starting to get closer to 8am than we’d like and we enquired about the ambulance. The nurse said she’s not sure what happened but that we should go down to the emergency transport area downstairs in the hospital and they would organise a taxi for us. We did this and of course with our flight being at 10am we were panicking as they advise you to be at  the airports an hour or an hour and a half in advance! We got our taxi and he was a lovely man who completely understood our situation and said he would take all the shortcuts he could but that it would cost more, at this stage, we did not care about money we just needed to get there and fast! As we got talking to the taxi man, he informed us that he too once had cancer, of his kidney. I thought this was such a coincidence that he had a story to tell too! His was quite inspirational as he had his surgery to get his tumour and kidney removed while his wife was in labour with they’re first child which they had been trying for years to have. And he said the child weighed the same as the tumour on his kidney. This was so freaky I was in awe at his story. He is the most positive man now and he said he eats completely healthy now. All he has is fruit all day and water. He kept telling me to be positive and he wished me well. While all of this conversation was happening, the vibrations of the car and the fact that he wasn’t going too slow on the roads, meant that my pain was worsening all the time.

We arrived at the airport at 8:53am. I limped in on my crutches and by the time we got so far in the door it had already taken it out of me and I had to sit down. We were panicking as we were so late for everything. We really wouldn’t be used to airports at all. The only time we go is on holidays. Mam went to find the check in desk for our bags and Dad went to find a wheelchair for me. What he did wrong when we think back now, is he should have got the assistance of someone to bring me on the wheelchair as it left things so much harder on them to get everything done fast when Dad had to push me around. When we got to the check in desk there was a massive que. Mam went up to ask someone about us checking in at the desk and said our flight is at 10am, it’s now past 9am. All of the others in the que were people on other flights that weren’t for ages, so the lady at the desk said if ye don’t mind skipping the que then it might be best! So we skipped the que in fear of missing our flight, nothing was stopping us getting home! We got some dirty looks and what not, but they didn’t realise the situation we were in with missing our flight, so we didn’t care.

We literally rushed from there to the waiting area for people with asssistance. We asked if we could go to the toilet quickly and they said to be fast as they’re going boarding us now shortly! It was a panic from one place to the next and eventually we were seated on the plane. Finally. We really wouldn’t have made the flight if we didn’t skip that que! Thank god for that. The relief I felt when I was seated on the plane knowing the next time I stand up I will be back in Ireland, felt amazing.

The flight wasn’t near as painful on my back/leg as it had been on the way over, which surprised me, I was expecting it to be bad. When we arrived back in Ireland I was never so happy! We flew into Knock which is only 40 minutes away from home. So we were home soon after. When we arrived at the house my grandparents were there waiting for us. They looked so relieved to see us! It was all a bit emotional at first with hugs and what not and then it was straight in to tell them all the news. They felt like they’d lived the week with us even though we were over there as Mam was constantly updating them! Granny was great she had lunch ready for us and even the dinner made. People are so good!

The rest of the day was constant visitors welcoming us home, it was so nice. I was on a high at the fact I was even back here because I thought I’d never get home at the rate things were going! It was just lovely to see all the family again and Oisín. Obviously being in a different country to have surgery while my boyfriend and all the family had to stay here and just contact us by phone, was hard. On both us and them. But that was all that could be done as they have to get on with they’re lives and I had to get on with the next step in my journey. I missed them all so much though so seeing them was just so good!

Wednesday the 9th of August 2017

Today, the travelling yesterday really showed it’s effect on me. It hit me like a tonne of bricks that I’m still not feeling good. The pleurisy was bad and my pain was even worse. All day long it was just going from bad to worse. So much so that I ended up back in bed in the evening and any visitors that called had to come up as far as me to see me. It was just typical. I guess it was maybe down to the fact that I’d had more movement yesterday than I’d had at all since surgery. Walking from one end of the corridor to the other in my ward in the hospital a couple of times each day, wasn’t really much compared to walking around the airport for a while and the same the other side when I got back. I also did an awful lot of walking around in the house when I got home first. With my crutches, but still walking which was pressure on the sore areas. There’s not a whole lot else I can say about today as it was a low day. Yesterday was a high though so I suppose I’ll take each low in return for a high! That seems to be the pattern I’m noticing now already anyway.

Friday the 11th of August 2017

After two days of not feeling entirely well at all, today I started to feel so much better! I was starting to be able to do a lot more for myself. As much as every morning I’m bad, and either my Mam or Dad have to be around to help me, during the day today I improved a lot. I even got into semi nice clothes compared to the pyjama type tracksuits iv had to wear because of where my surgery dressing is. Around the evening time, I took a notion to go over to the church with Dad to light a candle or two. When we got there I felt brave and said why not go into town for a spin while I was at it! I was fed up at home and felt like I hadn’t seen anywhere but Killaraght in ages. So we ventured for Boyle, with no plan really. My pain did annoy me on the way in with the vibrations of Dads van, but it wasn’t too bad thankfully! We decided to call and see my grandparents, who were happy to see us of course. It was a nice surprise since they didn’t think they’d see me out of the house for a while. We went from there to Oisíns house to see him and his family. I hadn’t seen them since before my surgery, so it was lovely to see them all and fill them all in on the week gone by. Time flew by chatting and we eventually went home. Oisín followed us out home to my house and I continued to feel quite good thankfully, we had a chilled out evening watching a movie and that was that! A good day. The best so far since surgery.

Saturday the 12th of August 2017

I wasn’t as good today as yesterday unfortunately as my lung started to hurt a small bit more than it had been all week. Sleeping for me has been difficult as I haven’t been able to lay on my left side because that’s the side of my wound. And I haven’t been able to lay on my right side because that’s the side that my lung is sore and I can’t breath when I lay that way. The same goes for my front, it hurts my lung. All that leaves is my back, and I couldn’t lay flat on my back either. So that meant I had to pile the pillows behind me on my bed and sleep on my back sitting upwards if that makes sense. Which is hard to get used to. But last night I felt my lung had improved so I took the risk of moving around a little, which had its effect on me today. I was on my last day of antibiotics for the pleurisy so I was hoping it wasn’t still badly there as I’d probably need more. I didn’t do a whole lot today, except I sort of decided to change my diet completely. I’ve cut out all sugar and everything unhealthy really, and I’m sticking to it. A good diet is apparently essential for cancer, and I’ll do anything at this stage to help myself have the best possible chance to get better! So my poor Mam has had to completely change the shopping list and buy a more healthy range of foods for me. Along with trying to keep all fruit and veg organic. It’s not easy but we’re doing it!

Sunday the 13th of August 2017

There was the yearly mass on today in my local graveyard which I really wanted to go to. I had said I’d wait and see how I was feeling thismorning and see what the weather is like because I couldn’t put myself at risk of going out in bad weather and making my pleurisy worse! It turned out, my pain in my leg was quite bad thismorning unfortunately. Walking around proved harder than the last few mornings. It’s always hard to tell how the rest of the day will be in the morning. But the mass was at 12pm and the weather wasn’t the best. It was dry but windy and cold. I’d have been standing out in that for a good while, so I decided against going as much as I’d wanted to.

My Mam stayed with me and the rest of the family went to the mass. As time went by I improved bit by bit. Oisín asked me if I’m up for going for dinner somewhere not too far away, so I said I was as I had improved and I got myself ready. I even felt like putting on make up for the first time in ages, it felt weird! It’s something I used to do so often but now it just felt unusual. But I felt great afterwards and I looked as if there’s not a thing wrong with me. Some of the Flanagan side of the family called to the house after mass and it was lovely to see them all. After they left I headed off for dinner with Oisín, and aside from the fact I had to bring the stupid crutches, I felt normal again! The car journey was sore as always, but once we went for the dinner and got settled I was grand. Afterwards we just had a relaxed day on the couch with movies since Niamh’s not really able for much else nowadays! This week as always, was consisting of constant ups and downs as I’m sure anyone reading this can tell. But when I do get out and back to normal again, it makes me feel so much better about myself. I couldn’t believe that it was nearly Tuesday, the day I might get my biopsy results. It was only two days away. Two days away from knowing what was in store for the next year for me. I was prepared for the worst case scenario so whatever they threw my way, I’d accept it!

 

 

Week 5

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Monday the 31st of July 2017

I woke up after my first night sleep back in my own bed in almost a week. Something that was starting to become a regular occurrence now unfortunately. The initial feeling is brilliant when you realise your no longer stuck in the hospital and back in your own comfy bed, but then I felt the pain as it started to creep it’s way back, as it always does. This just ruins the amazing feeling of happiness to be back in my own bed! I ended up spending most of today lying on the couch, with my Dad and brother spending their day looking after me. They’re company, along with a couple of other family members who visited, kept me distracted from how unwell I felt today, so it wasn’t so bad! I improved as the evening went on thank god. One of my friends asked us all over for the night and I jumped at the chance to go even if only for an hour as I feel like I miss everything that happens now all because of this disease. I wasn’t feeling 100% but in fairness, if I was to always wait until I am before I go anywhere I would never do anything fun! I just went over for an hour and it was so lovely to just chat to the girls like old times and feel like things are normal.

Tuesday the 1st of August 2017

It’s getting closer to the biopsy in Birmingham now and I feel not one bit ready for heading over there as I’ve been putting everything off such as the dreaded packing! I woke up pretty much similar to yesterday, morning is always the worst. But my Dad being the stubborn and persistent but loving man he is, he suggested we should go to Longford today if I was feeling up to it. The reason for this is because there is a relic of Mother Theresa of Calcutta in the Cathedral in Longford until tomorrow. It was a lovely idea and especially since we are heading off tomorrow, it would be no harm to ask for the help of anyone we could to get us there safe and to get me through this surgery and the overall experience over there. Faith is so important to me now. I may not be the best person for going to mass often enough, or for in the past, ever saying enough prayers. But since all of this started it has helped me in many ways to keep my faith. I’m the type of person who would rather go to the church when it’s empty and pray alone, than go to a church full of people and pray together. Living just beside my local church means this isn’t too hard done when I’m feeling up to it. I don’t attend mass enough, I will admit. But in my own time, and in my own ways, I am keeping all my faith in God to help me through this. I also know I am so lucky to have so many people out there with such great faith, praying for me too.

The evening was a busy one, I wrote last weeks blog and literally to the wire got it posted when visitors started arriving, wishing me well for the week ahead in Birmingham. Once everyone had gone, the dreaded packing began. Which for me, means stress. It was starting to feel real now that things were getting more serious. In one way, I just couldn’t wait to get over there and get this over with. In another way, I was scared. Just the thought of surgery was so daunting. I was mentally prepared though, and for me that’s everything. Give me a little bit of time to process and predict what is ahead, and I deal well with situations and stay strong. Otherwise, things aren’t quite as simple for me and I don’t stay as strong. I got an early night and actually slept well, however I was of course anxious getting to sleep knowing what the next day would bring.

Wednesday the 2nd of August 2017

The next step in my journey began. I was up at 6:30am and feeling awful pain wise, but I had to get going and get on with it because today was important. Mam, Dad and myself set off for Knock airport around 7:30am. The whole stress of airports is something I hate, as does everyone I suppose. Everything went well though thankfully. Until the flight got delayed and all the sitting around irritated my pain as it always does.

When we eventually got on the plane and the flight began, I was incredibly uncomfortable. The vibrations of the plane caused my pain from the tumour to just light up. It felt like the longest hour of my life. No matter what way I sat, it didn’t improve for a second. Luckily when we arrived in Birmingham, we had organised when booking the flights, that I would have wheelchair assistance. This took some pressure off me as my leg had just completely seized up from the pain in it on the plane. We got a taxi from the airport to the hospital straight away. We since realised we should have waited somewhere to let my pain ease before facing another journey with vibrations. We were headed for the Royal Orthopaedic Hospital. This was unfortunately 40 minutes from the airport. The pain worsened and worsened the whole way to the hospital, it was horrible!

Finally we arrived at the hospital at around 1pm. I was so relieved that the journey was over. We were told when I went up to the oncology ward that my room wasn’t quite ready yet and to come back for 2pm. So we went and got some lunch and returned at 2.

My first impressions of the hospital were that it’s tiny! It really is a very specialised hospital, I could see that straight away. I have never been in the UK before so hearing the accent on everyone was unusual and hard at first to get used to! I got my room at 2pm and settled in nicely for the evening. My room was lovely and spacious which is always good, there’s nothing worse than being squished into a small room the way you are in most hospitals in Ireland. I had to be assessed which is why they wanted me to come a day before the surgery. This meant they asked me my story so far, took my bloods, and gave me a big pile of paperwork to fill out and sign. I spent the whole evening and night asking the nurses what time my biopsy would be at the next day. They said there is a list that is usually put up very last minute with the order of everyone for surgery. I waited and waited and the day staff told me to check with the night staff as it would be late when it went up. By the time I was going to sleep there was still no list. The nurses said that I would probably be early morning though. This was even enough to know, just to have an idea of when it would be so I’d be prepared, mentally more than anything!

Thursday the 3rd of August 2017

They wake you up even earlier in this hospital than they do in Ireland. I was woken up at 6:30am. Once I was awake there was no going back to sleep as I remembered today was the day! The surgery was getting closer. I asked a nurse if the list was up yet and she said it was and that I should be called around 10 or 11am. Perfect. That gave me a few hours, but still not too many hours to have to think about it. I was getting nervous, naturally. I just wanted to get it over with at this stage. I went for a shower and just as I stepped out of the shower I heard a mans voice in my room looking for me. I had to shout back I’m sorry, that I was in the shower but I’ll be out in a minute. He responded with saying he would give me a few minutes and come back. I took a guess that this might be my doctor. The consultant who is over my case. Once I was back in my room after my shower, he returned and sure enough I was right, he was my consultant. He turned out to be a lovely man with a really nice way of putting things. He didn’t beat around the bush in what he was telling me about surgery and my whole situation. But he also had a light hearted way of saying certain things which put me at ease. He was going to be doing my surgery today. This also put me at ease as I had confidence in him that he seemed to know what he was talking about. He asked me exactly what I had been told about my cancer by the doctors back home. When I told him he basically said that they are fairly sure it is Ewing’s Sarcoma, but that all the images from the many scans I’ve had done are telling them X, and the needle biopsy sample is telling them Y. And it can only be one or the other. Until they have a 100% knowledge of which one it is, they can not start any treatment. This was the perfect way to describe it and I completely understood. However, one thing he said that I did not like, was that they should have a clearer picture after this biopsy, but that there is always a chance that they could still be left scratching their heads after and not know enough to plan treatment. I hated hearing this. That would mean a third biopsy! He explained the procedure which would take place for me today. He said that they are taking a larger sample of the soft tissue(tumour) compared to before. They are also taking a small amount of everything it is touching, the bone, muscle etc. The reason for this, being to tell exactly where it started to grow from, which would confirm the type of Sarcoma. He explained how I would be given a general anaesthetic just before the surgery so I would be asleep. He went through the possible side effects such as blood clots and pressure sores. I had been told previous by any member of staff that I asked in the hospital here and back home, that the incision would be no more than the size of my fingernail. This turned out to be not true. He said the incision would be about the length of a finger going parallel down the left of my back. This was a big shock to me as I did not realise it would be that big! The consultant also told me that I wouldn’t be called until afternoon as there had been a few changes to the list from morning. That gave me a few more hours so I didn’t mind too much. I had to fast before my surgery so the main reason I wanted to get it out of the way and not too late is because I’d be hungry!

I was all set and ready in my fabulous surgery gown and paper underwear waiting to go all morning. They said I’d be given about ten minutes notice before going down. This meant that as it started to come to afternoon, I was getting anxious and every time my door opened I thought it would be someone telling me it was my time. We waited and waited. No sign of anyone to call me down. By 3pm I started to feel incredibly weak. It was not nice. I had to be put on an IV drip of fluids. I wasn’t allowed to even drink water, and so my mouth was dry and my throat was starting to get sore. I was just so fed up of waiting and I couldn’t believe how late it was getting. Finally, at around 5pm, I was called. I started to get very nervous. I was brought down to theatre by two friendly porters. My parents could only go so far with me and then they saw me off and said their goodbyes until after. I got emotional. This was scary, I’m not going to sugar coat it one bit how scared I was. I know I’ve been so strong through all of this and I’m so proud of myself for that. But in this moment, I couldn’t have felt any more vulnerable. Everything was out of my hands for the next few hours and I was just going to be off dreaming somewhere unaware completely of what was being done to my body. I was holding back tears on that long journey down to theatre. It was just so daunting. I was brought into my theatre, where there is a small room to the side. This is where I was going to be put to sleep. They talked to me for a while about the procedure that was ahead and then they started the process of general anaesthetic. I remember asking how long will it take for me to fall asleep, and the nurse said everyone’s different, but usually somewhere between 30 seconds and 60 seconds. I’d easily say no more than 5-6 seconds later, I was out like a light.

I woke up in the recovery area blurry eyed and with a male nurse at my bedside. It surprised me that I was only slightly confused for a few seconds and not for longer when I think back. The nurse asked me a few routine questions like my name, age and date of birth, I suppose to make sure I was with it. The first question I had was if everything went well in surgery. He said everything went very well and the surgeon was very happy with the samples he got. Thank god. My mouth tasted like how a box with new shoes in it smells. It’s nice as a smell, but as a constant taste in your mouth, horrible. I also noticed my lip and my throat was very sore. My whole mouth just felt rotten. The nurse asked how my pain was. It was quite obvious my insides had been tampered with and I was lying on the wound on my back so it was very sore. He got me oral morphine and I hoped it would help. Then I thought I was going to vomit. He said that was quite normal to feel nausea after surgery. I didn’t actually vomit though thankfully. After another 10 minutes in the room with other people recovering, the two porters that brought me down, arrived, and took me back out. They said my parents were waiting eagerly outside. There they were surely and the look of relief when they saw me was something else.

I went back up to my ward and to my room. My parents kept trying to talk to me but my mouth was so sore and uncomfortable I far from wanted to talk to anyone! Thinking back and from what they tell me, I was quite moody. The anaesthetic was still wearing off and I suppose I was just high on all the medicine in me. If you were to get talking to them about how I was you would get a far more detailed, embarrassing impersonation of how bad I was! You see videos online of people after surgery saying all sorts of daft things and getting completely agitated, at the time I thought I was fine. But when I think back to it and my Dad describes what I was like, I realise I was just like the people in those videos! I asked the nurse why my throat was so sore and she said that they had a tube down my throat to help me breath during surgery as I was lying on my stomach so that was probably why it was sore. That also explained my sore lip. No matter how much water I drank the taste from the anaesthetic would not go away. I spent the evening in the bed as I was afraid to move from my back being painful. I didn’t sleep well that night naturally enough.

Friday the 4th of August 2017

I woke up feeling quite a lot better than I felt going to sleep. The taste in my mouth was mostly gone thankfully. The physio came to see me early in the morning around 10am. He got me crutches and I got out of the bed properly for the first time after surgery. I surprised myself at how well I was able to move. I was very sore, but still good considering. He showed me exactly what way I should walk with the crutches and told me as time goes on to put as much weight as I can on my left leg until it’s back to normal. I tried the stairs, with him showing me the way of going about it so that less of the strain was going on my bad leg. I was so happy with myself at how well I was going. Overall, today was a very good day. I spent my day combining rest and exercise. Having an equal balance of the two. As night approached, I started to feel more pain than I had felt yet. We figured that I was so good all day because a certain amount of the anaesthetic was still in my system, numbing the area. As soon as it was 24 hours later at around 7pm, all of that had wore off and I was in bed for the rest of the night in a great deal of pain. Small things like getting in and out of the bed, and going to the toilet, I now needed my Mam to help me with. Luckily, being 19, I have a young adult room which meant there was a spare bed for one parent to stay if I wanted them to, I needed my Mam there with me since last night so she continued to stay here for when I needed help. She was amazing. I could never thank her enough for all she did for me. I hated needing so much help and all of my dignity was gone out the window by today, but I guess that has to just be pushed to the side when I’m sick. I have to accept all the help I can get and appreciate it. Which I greatly do. It is still so hard to get used to though regardless.

Saturday the 5th of August 2017

Things took a turn for the worst today. Yesterday, it was looking like I would be fit to go home on Sunday, which was the day they told me originally when I came in that I’d be let go home. Even this morning I was good. I was my usual self and myself and my parents were in great humour, even having a laugh and getting on with things as we had to. Then around 2pm I got very tired and decided I would have a lye down and sleep for a while. I woke up absolutely freezing. I put this down to the windows being open and there having been a thunder and lightening storm during that time. I thought maybe I caught a cold or something. But I got gradually worse and worse. My parents couldn’t keep enough blankets on me I just wasn’t warming up. But I didn’t feel at all cold to touch. When the nurses checked my observations, I sure enough had a temperature. As the day went on, I got worse. I started to feel feverish. My throat was sore and my glands were also sore and swollen. I had a headache. And then came the chest pain…. The right side of my chest was tight every time I took a breath and I was starting to find it hard to breath. The pain increased as the evening went on until eventually I was experiencing the worst pain I have ever experienced in my entire life. It’s scary because the feeling of not being able to breath is something else. The pain was starting to travel around my side and into my back. No matter what way I sat, what way I lay, I was in excruciating pain. I was crying with it and actually at times almost screaming. The pain is something even while I write about it now, I never want to think about again. As a result of not being able to breath properly, I couldn’t talk. But my parents feeling extremely helpless, meant that they kept asking what they could do to help. But there was nothing that would help.

Something I failed to mention so far is how it being a weekend in the hospital, everything was very laid back. Finding a doctor to see me was almost impossible. The particular nurse that I had today was an agency nurse and it was her first time in this hospital, never mind on this ward. And if I’m going to be brutally honest, the nursing profession does not suit this particular person. She was not one bit nice or bothered about me. I’m not someone to judge that quick usually, but wow, she was someone who hates her job for sure. She did an ECG on me to make sure all was ok. She couldn’t work the machine and crumpled up the result sheets that printed numerous times, so who knows if what was done there was right at all! She claimed everything appeared fine. Eventually a doctor came to see me. She seemed not one bit bothered about me either to be honest. She said she doesn’t think it could be anything too serious because all that I seem to have at the minute is the chest pain. She did not see me with all the previous symptoms as they had wore off by the time she arrived. The chest pain was the main problem now. She came up with the idea that it might be Costochondritis, which is inflammation of the cartilage and rib cage surrounding my lungs. This was all that was done. I was left in pain for the night. I couldn’t stop crying with the pain and my poor parents had to just sit by me and watch and comfort me. It must have been horrible for them knowing there was nothing they could do. I had to take oral morphine for the pain as that was originally prescribed for me after the surgery. I was taking it every two hours, but it honestly did nothing for me. I went to sleep in awful pain that night. With my chest pain being on my right side and around into the right hand side of my back, this meant lying on my right side was now impossible. My surgery was on my left side. That ruled out lying on that side now too. I was limited to lying on my back, and even then, the pain was horrible unless I was upright. So I had to sleep sitting up in the bed. Lets just say it wasn’t the best sleep I’ve ever had.

Sunday the 6th of August 2017

At this stage now we knew there was no hope of us going home today. We cancelled all the flights and home was off the cards. I accepted this, but at the same time it was an annoying unfortunate set back. I was no better today pain wise. It continued and if anything it got worse. I was lucky to have a lovely nurse today who was so so helpful and did everything she could to help and make me comfortable. I had lost all appetite due to the pain. The oral morphine was starting to sicken me and it was causing me to vomit. Any food I had in my stomach was coming back up. It even hurt to vomit as it was putting strain on my chest. The combination of everything was just awful. Another doctor was called to see me. This time it was a different one along with the same one as yesterday. The doctor from yesterday completely changed her tune once she was with the other doctor, which I found typical. They decided that since the pain wasn’t going away, to rule out the possibility of a blood clot, they were going to take my blood from an artery in my hand rather than a vein. They did say that it is far more painful than taking blood from a vein. But this was the only way for them to tell what they needed to tell for the possibility of a blood clot. So what could I do only go with it. I actually screamed with the pain of it. It was the worst needle I have ever experienced.

Thankfully the doctor came back with the results of the blood test and said my lungs don’t have a blood clot and that everything appeared clear. This meant she continued to go with what she thought the previous day, that it was Costochondritis. At least we knew that it wasn’t anything too serious then. But the pain was truly horrible.

I luckily slightly improved towards the night. However the pain was still constantly there. It just wouldn’t go away. I was so angry about the fact this had to happen on top of everything. The surgery was enough to deal with for one week without this happening on top of everything. The timing just had to be so unfortunate, over the weekend when there’s a shortage of staff in the hospital and it’s like a different place than during the week. Also just as I was supposed to be recovering and getting back to Ireland. It just put a downer on everything, but I hoped things would improve soon and told myself I could get through it. I had to stay strong. Even though I felt far from it at my weakest point.

What follows this week and what Monday brought, would shock anyone, as it shocked me. Hospitals are the same everywhere, that’s a massive lesson this week taught me. You might have seen on Facebook that I got back home on Tuesday after that stressful and painful weekend. Let’s just say I was lucky I got home at all because on Monday we thought I wasn’t going anywhere anytime soon! Monday defines what a roller-coaster of a day is. Up and down in a short space of time. That’s for next weeks blog though so I’ll spare the details until next time!

 

 

Week 4

Monday the 24th of July 2017

Yesterday was the definition of a good day. And today, in complete contrast to that, was the definition of a bad day. I briefly mentioned this on week three’s blog post. I woke up this Monday morning feeling awful and as a result annoyed, as I had felt so good the previous day. I had no energy to do anything and my leg was so sore to walk on. The pain was bad. The whole day I had a consistent pain which never left. I started to write my blog around 7pm that evening and by 8:30pm my pain became massively sharp and unbearable. I had to completely abandon all plans to finish my blog post that evening! It was a worse pain than ever before. Sharp spams going from my pelvis/ back area all the way down my left leg to my foot. I had all my family working up a state as I was so bad I needed to, nearly like a child would do, squeeze my Mam’s hand with the pain! (Sorry Mam). But they responded exactly how any parent/ sibling would.

My Mam rang the hospital but as it was too late at night they said if I went back in to them I would have to go through the A+E and probably be sitting there waiting for hours. So that was not an option. I just had to somehow bare the pain and take everything I could possibly take in terms of pain relief! By around 11:30pm the pain eased slightly. Maybe I had too good of a weekend and I over did it without knowing it would have this effect on me. I’m sure I’ll learn everything through this experience that causes worse pain, the hard way! I got to sleep eventually but it was a night of waking up many times with a high temperature.

Tuesday the 25th of July 2017

Surprisingly enough, I woke up feeling so much better than yesterday and last night. I almost couldn’t believe how different I felt even after an unsettled night. My Mam, who was still concerned over last nights pain, called my GP to let her know. She wanted to see me today to hear about it and to make sure I was okay. I had an appointment for 2pm. I went for a shower at around 1pm and after my shower, out of absolutely no where, with no warning, my sharp pain that I got last night came back again. Absolutely typical! I went into my doctor with this horrible pain so she saw me at my worst. She said that as there has been as extension to my pain in the last week, the best place for me to be would be hospital. Which brought me to my next almost week stay in Sligo General Hospital! One that’s becoming all too familiar to me already at these early stages of the disease. Luckily, I got straight back into my ward, the orthopaedic ward, and I even got the room right next door to the one I stayed in the last time! I was seen by the doctor right away and he said he would increase my dosage of medication for the time being until I get assessed by the pain team the next morning.

Also, things were starting to become extremely unclear about my plan ahead once we got talking to the doctor. My Dad had received a call from someone in the hospital in Birmingham in the middle of the commotion of me going back to hospital. It was a secretary telling him that they are now in contact with the hospital in Belfast about me. This completely confused my Dad as she wasn’t too sure of why and he said he found it hard to understand her. She told him that she is not medically qualified to tell him any more and that she would organise for someone who is, to give him a call back and explain things. When we arrived in the hospital and we asked the doctor about this call we received, he said that it was for another biopsy. This was the first we had heard of ANOTHER biopsy! Just hearing that word again made me angry. They told me after the last biopsy that there was always a chance there may need to be a second one but I’d hoped in that scenario I would get lucky and not need two. My doctor said that he’s not sure why they are bringing Belfast into it and that maybe it is because it’s closer for us than Birmingham. So he said his gut feeling was that it would be better for me to have all done over there rather than confusing things. I was happy with this as Birmingham, I’m hearing, is the place of excellence on the area of bone cancer.

When we questioned more on this second biopsy, we were told the reason for it is because they still aren’t sure of my diagnosis. They need to confirm what it is for sure and the best way to do this is with another biopsy. They can’t start treating something if they aren’t 100% sure of what it is. They seem fairly sure that it’s Ewing’s Sarcoma, however there is some doubt, and there cannot be. This time, the biopsy is an open generous biopsy. Meaning it will be surgery. There will be an incision this time and I won’t be awake. (The only positive!) Whereas the last time I had a guided needle biopsy and I was only under a local anaesthetic so I was awake. They will remove a more generous sample of the tumour, (hence the name) so hopefully they can finally come up with a certain diagnosis after this.

The pain didn’t massively improve throughout the evening, it was a slow process of change. By the time I was trying to sleep it improved. However, when I was finishing writing Week Three’s blog that evening in hospital, I started to feel worse again so that is why maybe the ending comes across slightly abrupt! (Apologies). I once again had a broken night of sleep with the pain waking me up each time, and being the reason it took time to get back to sleep!

Wednesday the 26th of July 2017

I woke up again not feeling great. The pain wasn’t as sharp, but it was still there. The pain team came to see me and I got put on extra pain relief along with what I had already been on which was now increased too. The two new types of medication are for nerve pain and muscle pain, which is presumably what was causing my spasms of pain down as far as my foot. I was glad that I had been given a proper chance to explain exactly how the pain felt and that they prescribed me more pain relief as I really just couldn’t bare the thought of that sharp pain continuing.

In terms of the biopsy, we had been told it is now definitely going to take place in Birmingham. This I was glad of as I know they know what they’re dealing with over there! My Dad was starting to get concerned about the fact that we had signed off on all the paperwork for the HSE from the hospital almost two weeks ago, and had still heard nothing back. We were told it can take up to 10 days once the HSE get the paperwork for it to be approved on they’re side for me to travel to Birmingham. We obviously didn’t want to be told there was a delay in me getting over there all because of the paperwork taking forever to be approved! So my Dad made some calls to the HSE and to Birmingham. The HSE said that they had received all the paperwork almost two weeks ago, but that they are still missing one very important form regarding what my treatment is, from Sligo hospital. They could not put all the paperwork in for approval without this one form. Of course my Dad got straight on to the doctor to get this form completed and he said he was doing it that day as they rang him also. They told us it normally takes up to 10 working days to go through once they receive it. This we were not happy with. Especially since that meant two weeks before anything more was done! Now having to have another biopsy was already slowing things down in my head as I thought they had completed all the tests they needed. Time is precious with this disease so I knew we needed to try and get this moving as quick as we could. Especially since my pain was worsening.

My Dad was unbelievably persistent in getting this moving. He spent his whole day making phone calls and he started to involve local politicians in the hope that they would get the ball rolling. They said they would do everything they could. It was out of our hands and we just had to wait and see now.

Thursday the 27th of July 2017

Last night was the first time I took my new medication and it was the first night in ages that I slept right through! I was delighted when I woke up and realised it was actually morning, it was hard to believe. The side effects which I was warned of were low blood pressure causing me to feel light headed and fatigue. Both of which I felt. My Mam and Dad rang me that morning and they told me later on in the day that they really found it hard to understand me as I sounded so drowsy! They were definitely causing all the possible side effects anyway that’s for sure.

My Dad continued to try and get things moving quicker so that we wouldn’t have to wait ages to get over to Birmingham for my biopsy. It got to the stage where everything he could do was done. So we waited, and hoped. I had plenty of visitors to keep me busy and distracted! People were so good. People you don’t even expect to call, called. To all who visited me this week and improved my days, thank you! The doctor sent off the one form that was being waited on by the HSE at 4:30 today. Now it was a waiting game once again.

A combination of things were keeping my mind off the wait. Between the visitors and the nurses. I have nothing but good things to say about the nurses in my ward. I could talk all day about how nice they all are. They’re all so understanding and go above and beyond to make sure I was okay. I suppose they can see how this is massive for someone my age and they wanted to make me as comfortable as I could be. I never thought I’d say it but I got so used to the place this time that I didn’t even mind being there at this stage of the week. It was the best place for me to be and I knew that I was better off in there for times when my pain got bad.

Friday the 28th of July 2017

Today I woke up not feeling great again. I didn’t feel as bad as I felt when I came in to hospital but I still didn’t feel great and I didn’t have a good night of sleep either. It was a nuisance, I felt like I took a step forward and now I took a step back again!

I asked my parents if there had been any updates on the approval of the paperwork and there still wasn’t. As I started to come around a small bit as the day went on, I decided to take matters into my own hands a small bit. I was in the middle of writing a rather detailed email to a couple of high up people about the whole situation, when my phone rang. It was someone from the HSE informing me that the paperwork had been approved! I was so happy and could not believe how it went from being a possible two weeks to not even 24 hours! I was over the moon. Within the space of an hour, Birmingham were in contact with us to let us know we had now been scheduled in for next week, Thursday the 3rd of August, for my biopsy at 2pm. And that they want us over for admission on Wednesday. Finally, when you hear a date and time you feel like things are moving and like you’re getting somewhere. Of course along with the good news came stress. Typically today was the one day of the whole week that both of my parents were at work. We needed to get on to booking flights and looking into accommodation for Mam and Dad who both want to come over with me. The nurses were telling me to get on to this as soon as possible but I wanted to wait for my Mam to come down in the evening after she finished work to make sure I did everything right. We booked our flights for 10:15 on Wednesday morning and all was sorted.

I had plenty of visitors once again today including my lovely little cousins! They would just brighten up anyone’s day. Oisín was back from college too so he came down that night. It felt like everything was finally coming together and like I was making some kind of progress. I was told by the doctor that if I was feeling up to it over the weekend I could have day leave. Which sounds like I’m in jail or something! But I jumped at the chance of getting out for a while.

Saturday the 29th of July 2017

I went home for the day and I was so excited to be out again. By now the word was starting to spread about me getting my appointment for Birmingham and I was getting so many callers wishing me well. We went for a family dinner to the Landmark Hotel in Carrick and typically, my pain got bad as a result of sitting for so long! When the day came to an end I got so comfortable being back home and I no more wanted to go back to the hospital! But I knew I had to. Oisín brought me back up and once I got back of course it was like I never left. But I knew I wanted to get home for a few days before I had to head off to Birmingham, so I asked a nurse if there was any chance I could go home tomorrow for good. She was going looking into it for me.

Sunday the 30th of July 2017

The doctor approved of me going home today so long as I felt up to it. So of course I jumped at the chance! I had all packed by 10am and I got out around 12ish. I had a lovely day with the family watching the Roscommon match on TV even though nearly everyone I know was at it! My cousin Cian getting on the panel and getting as far as Croke Park so young of course had us also extremely proud and made it all the more special!

For me, just being at home to watch it was great, it beats being in hospital to watch it. It was just perfect. The small things like that matter more than ever now. The things that used to just seem so normal, are now so much more significant.

I’m writing this the evening before I head off for Birmingham and I still have to pack. I hate that job so much! So if this is longer than usual I’m sorry but its probably down to me putting off the packing. It’s unusual knowing I have to pack for this sort of a trip. Usually when your packing for a trip away it’s for a holiday and your excited. This is the complete opposite to a holiday, so it’s safe to say there is absolutely no element of excitement in the packing for this trip. But it has to be done, the joys!

 

 

Week 3

    Monday the 17th of July 2017 After a busy weekend of completely normal events, Monday was back to reality. An appointment in Sligo hospital to meet a new doctor which would be taking over my case. This turned out to be all it was, even though my parents thought they would get more […]

Week 2

IMG_4176Monday the 10th of July 2017

After a long dragged out full week in hospital I was finally let go home! Something positive. I couldn’t wait to just get a good night of sleep in my own bed, its the small things… Back to normality for a while at least. When I got home there was so many family and friends visiting. Everyone sending their support and best wishes for what was to come for myself and my family. It was a continuous chat to everyone about where we were at in terms of the whole thing. All we could tell people was that we won’t know more until the end of the week or maybe even next week when we got the biopsy results. Telling the same story over and over did get slightly repetitive and irritating I’m not going to lie, but it had to be done. I knew things would settle down eventually. Everyone was still hearing the news and feeling shocked and calling to see me or sending me a message.

Wednesday the 12th of July 2017

Things were hard to get used to at first. From remembering what tablets to take and when to feeling extremely bored all the time. I’m used to being so busy between work and teaching piano lessons. Everything had to be put on hold for a while. Which meant me being at home every day trying to find things to do! My friends called to see me which of course passed some time. I knew this time was going to drag, and it sure did. I just wanted to hear news, good or bad I needed to know.

Saturday the 15th of July 2017

I had been in Oisín’s house the night before and I got home late so I didn’t get talking to any of my family that night. Saturday morning came and my parents told me they got news the evening before from the doctor but decided not to tell me until this morning, as they wanted me to enjoy my evening there and they wanted to tell me face to face. It wasn’t good news. The tumour is malignant. I officially have cancer. They said it appears to be very active and that they now think it is a rare bone cancer called Chondrosarcoma. They told me not to google it, so of course that tempted me and I did! It’s very rare and it didn’t say anything positive on google whatsoever. I had mentally been preparing myself for the possibility that it could have been cancerous, however I hadn’t factored in that it might not be the type they initially thought and especially not worse. This did scare me, but again, I got on with things.

I went to a car show with Oisín and enjoyed my day so much, it felt like nothing was wrong. We followed that by going to the cinema. This day was exactly what I needed to happen, I felt normal again… It felt so good to just live in the moment and feel thoroughly happy for the first time in ages. I knew things were going to change soon but I also knew I was ready for that to happen and for now I was just going to appreciate every good thing in my life more than ever before.

 

 

 

 

 

Week 1

My name is Niamh Flanagan and I’m 19 years old. I’ve just recently been diognosed with a rare bone cancer of my left pelvic bone. I’m going to share my story here as I fight it with all I’ve got! I hope this can make a difference for anyone who is going through something similar. […]